Did you say another New Doctor!?? Or Which Procedure??!!!

I sit here and it is so EARLY on a Sunday morning I have to wonder if I am with half the world that is up, or am I NOT with the other half that is in bed. I know that for many with illnesses that are chronic in nature, for instance, Lupus, and/or RA, being UP in the middle of the night, when you should be sleeping gets to be part of the normal in your life. For me, the night terrors are mainly what wake me up at first. Then it is the pain of my joints, especially wrists, fingers, ankles, thumbs and feet that make me decide not to go back to bed. Sometimes I am up for a hour, and then wind up on the recliner sofa, with one of my puppies, Bubba Gump, and I get some more rest sleeping there for a couple of hours. Other times, I find myself in a mind set, that I NEED to DO, THIS, THAT AND THE OTHER, or I will be running behind, so my MIND keeps me UP, rather than it resting as it should. Either way, if I stay up as I am now, by the afternoon and early evening I will be feeling it, physically and mentally. I also am having a horrible time with headaches again. I had not dealt with headaches for several years, and then all of a sudden, I have just had almost one continuous one, that give me a breather for a few hours or a day, then it is right back in full force. Alas, the first part of that is an explanation (the opening) to the matter of what this new post is about. For anyone that is healthy, I realize you even have the occasional "well-visit", check ups, flu shots, etc. So, in a years time, you may be in and out of the doctors office or having routine lab work done a couple of times a year. Yet, when you have someone like myself, not only do we seem to almost "live" at a doctors office, we usually have at least 5 and more often more than 5 we have to deal with on a very regular basis. There are weeks that I may have 3 doctors to see for some type of visit in any given month. Then there are the endless it seems, number of blood labs, X-rays, CT Scans, and various other types of medical tests that come up, when you are ill with a different symptom, or something needs to be rechecked. Blood work is a huge one. My veins are so full of scar tissue, it takes an act of Congress, and the Lord to get a vein, that does NOT ROLL, does not "blow" on the technician, or even is able to get blood from. Plus with all of the scar tissue, at times they just cannot push through it, and then I have a huge number of "valves" that make is even more difficult to get through and get a "blood return". My last surgery, which was my cervical 4 level spinal surgery gave the nurses and even the anesthesiologist a Migraine for sure!!! Literally, I counted 19, YES I said 19 TIMES to get the needle in and to get a blood return enough for the IV to begin dripping. One of the times that happened, they decided to do a "central line" on me, right into a main artery. The problem is since they don't have an IV in the first place, they must do the "Central line" with NO relaxation medication, so you KNOW what is happening, an it is extremely uncomfortable! It does the trick, and certainly is much easier than worrying about an IV collapsing etc, when you have to have one for surgery, and then several days in the hospital, so you do not have to be stuck again. I know many of the nurses who just refuse to stick over twice, but when you are headed for the OR they HAVE TO GET A VEIN, if not, then the central line has to be done. They must have those IV fluids going before anything can be done. Since I am always prepared for it, fortunately I am not in the least afraid of needles, and they can stick me, as far as my thinking, as many times as it takes to get the IV started. It is a very good thing needles are not something I am squeamish about or I would be in big trouble! So, this last "temporal artery biopsy" is the latest in a very long line of surgeries and procedures I have tempered as of late. Along with that, which was yet another new surgery/procedure, I have the latest in am extremely large cast of physicians, mainly specialists in several fields. Oddly enough, each time I think "okay this has to be it", suddenly I need yet one more type of specialist, probably some type I did not even know about. I honestly thought I had been through the entire list of all specialists, but guess what, my PCP can find another one, for another symptom I need to see.
You find when you have an illness like Lupus, it can effect each and every part of your body. Whether it is internal organs, skin, brain, blood vessels, your face, your hair, your demeanor, whether you are emotional or not, whether you feel hot or cold, or whether you can sleep or not sleep... the list is endless. So, you also must be cautious about not BLAMING EVERY new thing that suddenly comes on, on the Lupus, or other AI disease. It could be an "offspring" of it, but it also could be something that totally has nothing to do with those illnesses, thus you may need further treatment for an unrelated illness.
For us, another doctor is just a night mare of a situation. I realize anyone who must find a "specialist" or gets referred to one also jumps through all of the hoops associated with that issue. There is just getting an appointment if they are available, take your insurance, and still take new patients. Then there is the particular insurance carrier you have. It also may mean you must have a referral sent by your PCP in order to just get approval and get into a new specialist. But, for someone chronically ill, and that may mean the situation is even more of an urgent nature, thus that means additional information you send in, call about, fax over, get your PCP more involved, try and talk directly to a nurse, and so forth so you can get an earlier appointment, rather than waiting 4 months at times. This usually means gathering up every piece of documentation you have saved (and believe me you learn to GET A COPY and SAVE A COPY of every test, surgery, medications listings, doctors listings, diagnosis' over the years, and so forth... especially tests such as MRI's, CT's, and blood work. Those usually are important when it comes to Lupus, RA and your joints, pain, and other issues that accompany them. I get a copy of everything, I scan it into my computer, make sure I keep the original always, and have the scanned copy so I can print it in the future. This saves you a great deal of headache, for I learned quickly, you usually accumulate lots of paperwork very quickly with visits, tests and surgeries, plus your medication list and list of physicians you see can be daunting also. Thus you are able to get what you need quickly when the situation arises. I have saved myself HOURS and HOURS of headaches, not having to dig through boxes of paperwork when it comes to these things. And I can just about guarantee, that every new physician you see will want as many of those records as you can produce. Now, that does NOT mean he or she will USE them! BUT, I can assure you they will ask for them. So, if you learn the "ropes" and have all of that ready at your very first visit, you can get far ahead when it comes to getting in the door, to the doctor, and possibly avoid having "duplicate" tests done. Now there are those doctors that NO matter HOW RECENT a test has been done, THEY WANT THEIR OWN! Believe me, when you have just had a CR scan 3 months ago, and you must see a new doctor, and they insist they want "their own" people to do the scans again, it is just another crappy mess for you to go through. I have heard doctors tell me, well some scanners show things better than others Well, that makes sense, depending on the age of the machine, etc... BUT if it has been done less than 6 months ago, they probably are going to see the exact same thing. Unless you are injured, or it is blood work that can change quickly, either it is a "money" thing for them, or they are just a little too "overly sure" of themselves, wanting their own stuff done. Needless to say, you can have a huge, or several huge folders on your computer, as well as printed of all kinds of doctors reports, OR reports, Scans, Blood Work, as well as various other types of documentation over the years to keep a record of. If you "wait" until one doctor gets something over to another, you may be waiting forever. You learn very quickly, doctors, along with their staff (that sometimes are just idiots honestly) do not usually get in a rush to fax or send anything to any one, including a doctor, pharmacy, or an order they request for you to have a test. So, it is in your own best interest to get all of those things gathered up yourself, as well as a COMPLETE listing of all of your doctors, tests, surgeries, health conditions, and a list of medications, and what you are allergic to, together. If you are headed for the hospital for a procedure, or for a test, or to a new doctor, my advise is to take all of that along, I can say now at the very least you will need that medication, allergies (if any), and listing of your medical issues. Depending on what or whom you are going for, the listing of other physicians, procedures, and so forth can be helpful thus it may save you hours of filling out new paperwork from memory. For me, if I forget to bring these lists, I will assuredly all of a sudden develop "amnesia" of all of it, as soon as I sit down to fill out paperwork. Also, many of your new doctors have websites. You can go to them, download all of the "new patient" documentation and fill it out ahead of time. That saves valuable time also. Some of them can even be sent back over the internet, but you sure can print it out and get it ready before hand. Also, check if they have a website for things like which insurance they take and any other "new patient" information that may be helpful before you arrive for that first appointment. The only thing I wished they would include, IS THE BEDSIDE MANNER of the staff and physician!!! LOL!!! I laugh, but believe me, I have seen it all, and heard it all. I have some of the best, most caring, patient and understanding physicians, and then I have or have had some that are total jack-asses. You will find out there are some awesome doctors out there are far as their medical knowledge and practice, but their mannerisms when it comes to personality desperately are lacking. There are many other "pointers" I can give to help you be a "better" patient, and get much better care for the most part. These above are just a few. The one thing and I end this particular post with this... EDUCATE YOURSELF! Get online and do as much research as you can. Research your symptoms, your diagnosis (if you already have one), your doctors, the clinics, look for places where patients have left their own experience information about who you are seeing, ask questions also when you are making an appointment. But mostly know as much as you can about your own body, and don't just look at one website and stop. There is a great deal, a whole entire wealth of information on the internet, some very good, and some a bunch of junk. You have to "weigh" out common sense, and what makes sense. If you see the same list of symptoms on the same diagnosis, on 10 websites, then you can be pretty sure, that information is fairly accurate. Especially if it comes from very "reputable" places, such as the Mayo Clinic, The Cleveland Clinic, Research places and non-profits like for instance the Lupus Foundation. They will carry accurate information and it will more than likely be up to date and possibly the latest as far as medications, tests, and things you can ask your own doctor. You will find many doctors that are "GLAD" patients educate themselves. Yet, there are others that just "hate" it. They feel the patient "thinks" they know it all, and that a patient is "believing" everything they see and so on, but for the most part that is not true. People just want to understand more about what is going on with them, and during these times, there are more patients, in fact way too many patients, and definitely not nearly enough doctors. So, you may be able to make better use of what little time we get in office visits, if you have done your own "homework", written down questions, or printed things from online, and have them ready to ask, and get answers that make sense. So, do your homework, whether from the internet, reading a book, or however you are able to get more information, it will benefit you immensely in the future, especially when dealing with a chronic life time illness.
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